Caregiving for a person with Charles Bonnet Syndrome

Cargiving for a person with CBS is similar to caring for a person with cancer, heart disease, dementia, etc.  A unique feature however is that the person is also blind.  Blind etiquette and best practices may not be obvious to caregivers.  Many persons with a visual impairment will relate trying to help the person by moving things around in the house.

Often the person develops CBS directly after losing vision.  They may retain some vision in that they can see objects but not clearly, see only a portion of their visual field, can perceive light from darkness, or can detect movement. Any amount of vision is helpful to the person in terms of their ability to take care of activities of daily living, navigating around the home or community, and taking care of personal hygiene. Only a small percentage of those with visual loss have no light perception.

 First reactions to sight loss vary but can include anxiety and a sense of helplessness.  Grieving is common and can include any of the Kubler-Ross stages of grief.  Denial, bargaining, anger, depression and finally acceptance of their sight loss will occur but may vary in their timing and intensity.

 It is essential for the person to begin to learn blindness skills as soon as can be arranged. There are many sources of help from your home state which will teach walking with a white cane, cooking, home management, using technology, and alternate forms of reading. The blind services that are available are geared toward working age persons who wish to return to work, and elderly persons who would like to live in their home community with as much independence as possible.  These skills will help the person deal with CBS.

 Many people with CBS than not will not reveal they are having visual hallucinations.  They don’t understand what they are seeing and how it relates to their life. They are afraid to be thought mentally ill or have dementia.  The person with CBS may remain in this state for months or years without telling even those they completely trust about the hallucinations.

 During this time the person with CBS may have trouble paying attention due to distractions, be fearful, or attempt to deal with the hallucinations as if they were real.  Caregivers may not have insight into their loved one’s behavior and attribute it to a little known but prevalent condition among those with sight loss.

 If the person with CBS has told their caregivers about the hallucinations and they are lucky enough to have found a medical practitioner who is familiar with CBS, there are still challenges. The person may call the caregiver to come see what they are seeing many times a day. The care giver will need to respond to the person’s emotions and provide reassurance. The caregiver should not tell the person that they also see what they see.  It is essential that the person be told that the hallucinations are not real.

 Having a loved one in ongoing emotional upset will fray your own emotions. Anger, helplessness, guilt, depression, grief, and personal illness are possible. Caregivers should strongly consider getting help for themselves. Counseling in the form of cognitive behavior therapy should be sought. Joining a CBS caregiver group will help with feelings of isolation and loneliness.  The American Medical Association has a Caregiver Self-Assessment Questionnaire to gauge the impact that caregiving, and can be found at: https://www.healthinaging.org/tools-and-tips/caregiver-self-assessment-questionnaire .

 CBS may be disturbing the person’s sleep and yours due to experiences at night. The fatigue that comes from many consecutive days of insufficient sleep will make CBS worse for the person who has it, and caregiving more difficult.